Active not recruitingOBSERVATIONAL

MYOPROSP - a Prospective Cohort Study in Myositis

The MYOPROSP study is focused on improving care for people with myositis, which are diseases causing muscle inflammation and weakness. It involves adults who have been diagnosed with or might have myositis. Participants will have their health information, blood samples, and sometimes muscle samples or scans collected, much like what happens during usual hospital visits. These samples and information help researchers understand myositis better, improve how it's diagnosed, and see how new treatments might work. The goal is to find better ways to care for patients with these conditions and to understand the disease more deeply. Regular follow-up visits will help track changes over time and learn what helps patients most.

At a glance

Status

Active not recruiting

Sponsor

University of Manchester

Enrolment target

300

Start

04 Oct 2016

Estimated completion

01 Dec 2030

Myositis Idiopathic Inflammatory Myopathy

What is this study about?

The MYOPROSP study is all about understanding a group of conditions called myositis, which cause your muscles to become inflamed and weak. Because myositis can be tricky to diagnose and vary a lot from person to person, this study aims to gather as much information as possible from adults who have been diagnosed with myositis or are still waiting for a diagnosis.

Researchers will collect information at different times, including details about your health, blood samples, and sometimes muscle biopsies (a small sample of muscle tissue) or special scans like MRI. This isn't just for research; it's also similar to the kind of tests you might have during your usual hospital appointments. All of this information helps scientists learn more about what causes myositis, how it progresses, and how current treatments work. Ultimately, the goal is to find better ways to diagnose myositis earlier and develop more effective treatments, which can greatly improve the quality of life for people living with these conditions.

The study also looks at how well certain tests and measurements (called biomarkers) work in diagnosing myositis and predicting how severe it might be. By understanding these better, doctors can make more informed decisions about your care. The study will also help identify new ways to group different types of myositis and even look for new genetic factors that might be involved. All the information collected will be used in a way that keeps your personal details private.

Key takeaways

It's a study looking to understand myositis better.
It involves adults with suspected or confirmed myositis.
Information and samples will be collected over about a year.
The goal is better diagnosis and treatment for myositis.
Participation will not affect your standard medical care.
You can stop participating at any time.

Who may be eligible?

This study is looking for adult patients, aged 18 or older, who have been diagnosed with myositis or are currently being investigated because their doctors suspect they might have it. This includes various types of myositis, such as dermatomyositis, polymyositis, inclusion body myositis, and others where muscle inflammation is the main problem.

It's really important for the study to include people who are still trying to get a definite diagnosis, as this helps researchers understand the early stages of the disease. They also want to include those who have been recently diagnosed, ideally within the last two years, to see how the condition changes over time and how treatments are working.

However, some people might not be able to join. This includes those whose muscle problems are caused by things like alcohol or certain drugs, or if their myositis has been ongoing for more than two years. Also, if you're unable to have an MRI scan due to medical reasons, you might not be able to take part in the part of the study that involves those scans.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have myositis, or are doctors investigating if you might have it?
Has your diagnosis of myositis (or suspected symptoms) started within the last two years?
Are your muscle problems not caused by alcohol or drug use?
Are you able to provide consent and attend appointments?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you'll be asked to attend clinic visits, usually at the start, and then at 3, 6, and 12 months. These visits will involve taking blood samples and completing questionnaires about your health and how you're feeling. To get a complete picture, doctors might also take a small muscle sample (a biopsy) at the beginning of the study, and possibly again after 6 months to see how you're responding to treatment. You might also be offered special MRI scans of your muscles and heart at the start and repeated after 6 months. All of these procedures are similar to what you might have as part of your regular care, but the information will also be used for research. The total duration of your active participation, including follow-up, would typically be for one year.

Potential risks and benefits

Taking part in this study could help future patients with myositis by improving our understanding of the condition and leading to better diagnosis and treatment. For you personally, there might not be a direct medical benefit, but you'll be contributing to important scientific progress. The procedures, like blood tests and MRI scans, are generally safe but carry small risks, such as bruising from blood draws or claustrophobia during an MRI. Muscle biopsies involve a minor surgical procedure and have risks like pain, bleeding, or infection, which your doctor will discuss with you. Remember, you can choose to leave the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

The University of Manchester
Verified postcode
Manchester, United Kingdom

Common questions

What is myositis?

Myositis is a general term for diseases that cause inflammation and weakness in your muscles.

Why is this study important?

This study aims to improve how myositis is diagnosed and treated, helping patients get better care in the future.

Will taking part change my medical treatment?

No, your medical care will be managed by your usual doctor, and this study will not interfere with your standard treatment plan.

How often will I need to visit the hospital?

You'll have visits at the start of the study, and then typically at 3, 6, and 12 months.

Will my personal details be kept private?

Yes, all your information will be kept anonymous and your personal details will not be shared.